NICE will appraise Spinraza for all those with SMA!
The National Institute for Health and Care Excellence (NICE) announced that it will appraise Spinraza as a treatment for all those with spinal muscular atrophy
Google deprived TreatSMA of access to email and data
On 2 January 2018 all mailboxes of TreatSMA were suspended by Google without warning. As a result, the TreatSMA team lost access to all emails, address books and shared documents which until then were hosted on Google’s G Suite service.
An urgent request to SMA Families living in Scotland
The Scottish Medicines Consortium (SMC) will shortly start assessing nusinersen (Spinraza™) for use in NHS Scotland for the treatment of SMA Types 1, 2 and 3.
Response from NHS England
Last Friday NHS England sent a disappointing response to our letter on access criteria to Spinraza under Expanded Access Programme.
Letter to NHS England from the medical and patient communities
Efforts continue on bringing about changes to the NHS commissioning policy on nusinersen. Last night almost 40 clinicians and the four UK SMA groups sent another letter to NHS England. The letter underlined our position that nusinersen treatment under the Expanded Access Programme should be provided to all those who have type 1 SMA.
To Whom It May Concern
I wish you knew the turmoil my heart is in with every single waking beat. I wish you felt the lump in my throat caused by the overwhelming fear of defeat. I wish you saw what I see when I…
Community response to NHS letter
Today TreatSMA sent a reply to the NHS letter received last month that defended the draconian funding restrictions for compassionate access to nusinersen.